Together for Short Lives
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Northern Ireland

There are 1,300 children in Northern Ireland with life-limiting or life-threatening conditions.

Together for Short Lives is working in partnership with the sector in Northern Ireland to secure funding to implement the Department of Health’s ‘Providing High Quality Palliative Care for Our Children: A Strategy for Children’s Palliative and End-of-Life care 2016-26’. This includes provision for the parity of funding between children’s and adults’ palliative care. This would equate to providing an additional £800,000 per year to Northern Ireland Children’s Hospice.

The recommendations have been produced by a project group of healthcare professionals, officials and representatives of the Northern Ireland Children’s Hospice.

It is now crucial that the department allocates funding and develops the infrastructure needed to implement it. We ask that the Northern Ireland Executive takes the following action:

  1. Adequately fund children’s palliative care to meet demand: Provide parity of funding for both children’s and adults’ palliative care. This would equate to providing an additional £800,000 per year to Northern Ireland Children’s Hospice.
  2. Prevent family breakdown: Services need to be better organised around families and not institutions so it is easier for them to navigate the system and access the care and support they need. The Executive should commit to funding short breaks to provide respite care for families – giving them time to recharge their batteries. This would reduce the likelihood of family breakdown. Families should be able to access planned and emergency short breaks both inside and outside of their home.
  3. Nursing care today and tomorrow: Make sure that there is a sustainable children’s palliative care workforce in Northern Ireland. Children’s palliative care requires a well-trained, highly-skilled workforce and children and young people should have access to specialised care. However, Northern Ireland is yet to fund and appoint a dedicated children’s palliative care consultant – a role which is a critical part of the multidisciplinary team needed to care for seriously ill children.
  4. Support managed clinical networks (MCNs): The National Institute for Health and Care Excellence (NICE) recommends that services should be based on managed clinical networks who should collaborate in planning and providing care. MCNs should build a strategic and joined up approach to children’s palliative care across health and social care, across the statutory and charitable sectors and in different care settings. There is currently no children’s palliative care network in Northern Ireland.
  5. Lift the baby benefit bar: Allowing families with children under three with life limiting and life-threatening conditions to access the mobility component of the disability living allowance so they can purchase a specially adapted vehicle to carry life-supporting equipment. Currently the benefit is only available to children aged three and above.
  6. Give young people dignity and respect – bridging the cliff edge in care between children’s and adult services: Making sure that all children and young people with long-term conditions have access to timely, high-quality transition planning to adult services.
  7. Care and compassion: Allocate funds to make sure that bereaved parents have a right to a period of statutory paid leave following the death of their child.
Policy and influencing